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Louise: "Loving our authentic autistic selves is an act of rebellion.”
Issue XVII Cover Feature Empower
Written Interview by Akshita Singh
Lou is a 21 year old award-winning autistic advocate and content creator who is passionate about building a world that truly works for autistic people. Lou shares her own lived experiences raising awareness and acceptance for autistic people. She engages with politicians and organisations in advocating for change.
Can you share your journey of discovering that you’re autistic? When did you first realise that you might be autistic, and what led you to seek a diagnosis? How did the diagnosis impact your life and understanding of yourself and your place in the world?
Lou: I have always had an innate feeling of being different to other people but I wasn’t diagnosed as autistic until I was 15. It was ultimately the struggles that I was having with my mental health which led me to being diagnosed. I was struggling due to the toll that living as an autistic person in a world not built for me was having on my mental health. Looking back now, I realise that I demonstrated lots of autistic traits, such as becoming easily overwhelmed by noise, often feeling on the edge of friendship groups and having intense interests.
However, the fact that I didn’t fit the stereotypes of what an autistic person was, led to this
not being picked up. This has led me to feel particularly passionate about creating a world
which is aware of autism and accepting of autistic people. Knowing I was autistic was life
changing and life saving for me. It gave me an understanding of myself and words for the
experiences I was having. It taught me to love and accept my brain and to not be ashamed of being different. Through realising I was autistic, I found a sense of community, a community of other autistic people who understood the joys and struggles of being autistic.
How has your personal experience of being autistic influenced your perspective on neurodiversity and the importance of acceptance in society? In what ways do you draw from and incorporate your personal journey into your advocacy to connect with others and create meaningful change?
Lou: Being autistic has made me realise both how far we have come as a society in supporting and accepting autistic people, but equally how far we still have to go in building a world that truly works. My own personal journey as an autistic person and the lived experiences of other autistic people are deeply entwined in my advocacy work. In order to make meaningful change, it is important that we amplify autistic voices on the issues which affect our daily lives. After I was diagnosed as autistic, I found myself searching for information on autism from an autistic person’s perspective however, a lot of the information I found was from parents or professionals. It felt important to share the rich and deep internal experiences of being autistic rather than simply focusing on the parts of being autistic which can be observed by others. This led me to set up my instagram account and continue to share information and parts of my life from an autistic perspective.
How do you use your platform to educate and raise awareness about autism and other neurodivergent conditions?
Lou: My parents actually weren’t supportive at all in the beginning. Neither were my friends, or my extended family. It was really difficult. I still sometimes struggle having conversations with them. I do believe patience is key. The support I have today has been built over the years. I have earned every ounce of the respect I have today. It’s all hard work, perseverance and focus. I prioritized my work and financial independence back in those days. It also made me realize privilege is a real thing. I have fought twice as hard for visibility and my share of opportunities.
Are there any particular strategies, therapies, or coping mechanisms that have been helpful for you in managing the sensory sensitivities or other aspects of being autistic?
Lou: I adjust what I can in my environment to be able to cope with sensory issues. For example, using noise cancelling headphones, turning off bright overwhelming lights and wearing clothes which are soft and don’t trigger sensory issues. For me, it is also about managing my energy levels overall and considering whether I have the capacity to cope with sensory input at that time. For example, recognising that if I am already feeling exhausted and overwhelmed, it will be best to stay at home to regulate instead of going to a busy, loud and bright supermarket, for instance. If you are an autistic person who struggles with sensory issues, it can be helpful to consider the reasonable adjustments available such as, using noise cancelling headphones or asking for the lights to be turned off.
Can you discuss the challenges and misconceptions that neurodivergent individuals often face, and how you work to break down these barriers? Are there any stereotypes about autism that you would like to debunk? What are some important messages or insights you would like to share with the wider community to foster understanding and acceptance?
Lou: Autistic people often face many barriers in society, whether that be barriers in the education system or barriers to employment. For example, only 16% of autistic people are in full time employment and autistic people are twice as likely to be excluded from school. Autistic people may for example, face discrimination or bullying, may struggle to communicate (particularly with non autistic people), may face sensory issues which cause distress and struggle with change in routine. I feel passionately about breaking down these barriers through raising awareness of these barriers and for example, working with employers to reduce some of the barriers autistic people are facing. Equally, I raise awareness of the different type of support and reasonable adjustments for autistic people, as sometimes it can be tough to know the type of support we are able to ask for.
How do you navigate the intersectionality of being a neurodivergent individual and other aspects of your identity, such as gender, race, or sexuality? How do these intersections shape your advocacy and the issues you prioritise?
Lou: As an autistic woman, I feel that there needs to be more awareness that girls, women and people marginalised by their gender are autistic too. Sometimes there is an assumption that only men are autistic. Autistic people who are multiply marginalised whether that be due to race, sexuality, gender identity or background, face huge barriers to realising they are autistic, getting a diagnosis and accessing support.
What advice do you have for individuals who may be on their own journey of self-discovery, suspecting they might autistic? How can they navigate the process of seeking a diagnosis and finding support? What advice do you have for individuals who may be autistic or facing similar challenges? How can they find strength, acceptance, and a sense of community?
Lou: Firstly, I would say congratulations on learning more about yourself. If you think that you are autistic then it can be helpful to learn more about being autistic from other autistic people’s experiences. Social media and specifically the #ActuallyAutistic hashtag is a good place to start. It can also be useful to think about strategies you can put in place to cope and to help yourself. For example, using an emotion wheel to identify the specific emotion you are experiencing if you struggle with identifying your emotions or looking at google earth in
advance to see what places look like, if you struggle with new places and unpredictability. If
you are struggling to accept yourself, I would remind you that for so long the world has
taught us that as autistic people, who we are isn’t good enough so we have to fight back.
Loving our authentic autistic selves is an act of rebellion.
In your opinion, what are some key steps that society can take to create a more inclusive and supportive environment for neurodivergent individuals? How can we promote understanding, reduce stigma, and ensure equal opportunities for all?
Lou: In my opinion, we need to start being more accepting of difference and focusing less on
conformity. It is important that we value the inherent worth of each person. I would love to
see public spaces become more accessible to neurodivergent people through for example,
making accessibility adjustments (E.g. having quiet spaces and sensory adjustments) as well as more understanding of autism and the different ways autism may present. In the world, I think we need to stop judging autistic traits (including when autistic traits present in non autistic traits) such as, bluntness, moving differently from the norm and having intense
interests.
Can you share any personal anecdotes or stories of how your advocacy work has made a positive impact on autistic individuals? What are some memorable moments or feedback you have received?
Lou: I have had so many lovely messages and feedback from people and they honestly always make me feel so grateful. Some of the most memorable messages are from an autistic person who said that my content had allowed them to feel represented, imagine a future for themself and saved their life in a dark time. Equally, I love it when autistic people realise that they are autistic from my content, sometimes after 60 or 70 years of not knowing and not having the answer as to why they are struggling so much or feel so painfully different.
RAPID FIRE ROUND WITH LOU
What is your go-to comfort food?
If you could have any superpower, what would it be?
What is the last show you binge-watched?
What is the most adventurous thing you’ve ever done?
If you could time travel, would you go to the past or the future?
Favourite social media influencer?
Chicken nuggets.
Mind Reading.
Anne of Green Gables
I love surfing.
The future
@nina_tame
Looking ahead, what are your goals and aspirations for the future of neurodiversity acceptance and support? Are there any particular issues or areas you hope to address or contribute to in the coming years? How do you envision your role in driving change and fostering a more inclusive society?
Lou: There are so many different areas which I would love to contribute to and could see change making a massive difference to the lives of neurodivergent people, including education, employment, mental health and accessibility. Most of all, I would like to keep making content to help neurodivergent people to feel seen and to understand themselves, as well as educating society on how they can adjust and build a world that works for us. In the future, I would love to work more with organisations on making change on a wider scale, whatever that looks like.